Saturday, March 28, 2009

I have had a lot of trouble over the last few days framing my response to my beautiful wife’s death. Obviously it’s something that is hard to comprehend, but it’s something that has been a long time coming. Amanda and I had no real delusions that she would find a cure in Texas, but what we did hope for was more time. We hoped that she could find treatments that could potentially prolong her relative wellness long enough for science and medicine to overcome her sub-type. Her only fear was of dying in Texas, away from Alastair, her parents, and from me. It sickens me that her worst fear was realized, but I have taken some comfort from the fact that she held her father’s hand as she lost consciousness for the last time.

I have cried. Boy have I ever cried. Seeing her so lifeless in the ICU—hooked to a ventilator but long since gone–was the single most horrible thing I had ever seen in my life, and during the interminable wait for the “comfort care” orders (those that would end her physical life), I was a train-wreck. I couldn’t even take comfort in the presence of her parents. I sat in the hall and watched for the nurse and just sobbed. Two strangers stopped and offered their support, along with Amanda’s nurse. When they told us to come in, that the removal of life-support was complete, I rushed to her side and whispered over and over for her to just rest. I held her hand, I watched her pulse slow from 130 to 30, and I loved her furiously.

I cried for the next hour, left in the room with her body and waiting for the off-shift administrator to come tell us what steps needed to be taken next, and felt completely empty walking back to the room. I cried off and on all the next day, and when I tried to explain to Alastair what it meant that Mommy had died.

I cry a little bit every time he asks me when she’s coming back, and every time I realize some minute aspect of our life-rituals has to change. In the weeks before her death, we finally got Skype working between the house and her hotel in Texas. Every night before bed we would call Mommy on the “computer phone” and pray with her. Tonight he asked if she has her computer phone.

But I’ve been deeply inspired, too. The outpouring of love, both virtual and physical, has been enough to offset a great deal of that pain. Cards have begun to arrive, as well as food, but what has really moved me is reading the online dedications from the Pajiba community. I have read them all, and while I have not been a frequent visitor to the site, I feel like a part of the family. Amanda exposed herself on Pajiba and her blog in ways that most don’t. In fact, she exposed herself in ways that would mortify privacy experts. But we decided from the start that her journey could help others find courage, strength, and healing. We also decided not to pull any punches, as our blogs would stand as a future history, undiluted, of what horrors she would go through. What amazed us both is that so many people actually read those posts. All of them. Her story became a lightning rod of hope and healing energy, and she was soon added to prayer lists the world over. People we’d never met were sending flowers (the first of which, received only 4 days after her initial admission, brought buckets o’ tears), books, movies, music, cards, apple-cakes, clothing, and *ahem* electronic devices. She cherished every single thing she received, and kept a very carefully organized folder of Amazon packing lists to write thank you notes.

I thought at first that I would not be able to read Pajiba’s dedication to Amanda, but the farther I read, the more the tears turned to laughs.

We never dwelt long on the subject of her “final wishes”, but she did outline a few:1. Cremation. She frequently told me that if I didn’t cremate her, she’d come back to haunt me.2. A New Orleans style funeral. Ultimately never serious about this one, what she wanted was a dignified sobriety to start off the mourning, but then a party to celebrate her life. Gotcha covered, babe.3. Alastair to remember his mommy. And we’re going to work awfully hard to make sure that gets handled correctly.

My wife never thought she mattered. She always felt that her lack of an individually exceptional skill meant that she was destined to be forgotten, passed by, and generally ignored. It was an insecurity that she battled right up until those first flowers arrived at St. Mary’s. For your kind words, I thank you. For your love, I am indebted to you. For 15 years with my soul-mate, I am coming to realize there is no response. I feel like my soul has been attacked with a melon-baller, and I imagine that will continue for a long time. And for Alastair, just keep praying. He’s too young to really understand, and fortunately Amanda had already been away for the last month, so there’s no huge and immediate lifestyle change to cause him panic.

I miss her tremendously. She was so smart, witty, and sassy. She was also pigheaded and refused to accept new elements of her disease were actually symptoms. We argued endlessly over whether or not she should tell her doctors about her ear-pains, persistent indigestion, never-ending menstruation, avocado-sized (and shaped) bruises, and finally her leg pain. She refused to be hospitalized more than once when running dangerously high fevers. Hell, I almost had to drag her to the hospital last spring to get this all started, even though she was losing her vision and had nearly collapsed in the shower.

Yet for all of it I was fortunate to have that year with her. Undiagnosed, leukemia can kill within 3 months. She had already been experiencing symptoms for 7!

People have already placed blame for her death on her decision to go to Texas. Please don’t make the mistake of thinking that way. Amanda was fiercely determined to be in control of her destiny, and staying in Richmond meant palliative care. Houston offered hope and possibility. She knew the risks, but she also knew the potential rewards.

And if she had not died Wednesday, her condition would only have gotten worse. The pain and swelling in her feet were from hemostasis, which meant the blood was pooling and no longer flowing properly. We both realized the ultimate outcome of that would be gangrene and amputation, and the doctors later told us that her internal organs would have soon begun shutting down, leaving her without any sense of dignity and trapped in an ever-worsening body. She was, quite simply, very lucky to have gone the way she did.

And we were all blessed to have her for as long as we did. So say we all.

Thursday, March 26, 2009

Tuesday night, before Alastair went to bed, we had our last Skype call. Alastair and Amanda had a great time praying, and I went and fetched the kitties for Amanda to see.

A couple hours later (probably around 11:15 EDT), she called me, and we talked for about 15 minutes. The conversation was lighthearted, upbeat, and fairly mundane: she wanted me to return to Texas on Friday, we chatted about BSG (she had The Cable at MDAnderson and got to see the finale), and she told me she was feeling pretty well.

At some point in the night, she started experiencing dizziness and apparently vomited. By the time her dad got there in the morning, she was sitting in the bathroom with her head in her hands and very out of sorts. The staff helped her back to bed, where she sounded very groggy and couldn't get comfortable.

She raised her hand, and her father took it. They held hands for several minutes while she faded away.

A medical team rushed in and could not bring her around. They rushed her to the ICU where she was intubated, and had Ed notify me and Leigh to get on a plane.

A CAT scan was performed at some point and revealed she had bleeding on her brain. Her platelet counts had gotten so low that her blood vessels simply failed, and the bleeding put pressure near her brain stem, cutting off vital functions.

We arrived in Texas 5 hours later, and after almost 90 minutes of waiting were taken to her.

Her body was still functioning, but Amanda had long since left. It took over an hour to get the doctors to sign orders to remove life support, and once they did, she died almost instantly (10:15p).

Her parents and I were by her side.

Manda's not sick any more.

---

For those who are curious, I will leave her blog up. I might disable further comments, but I imagine I'll ultimately merge her posts and mine, cut it to PDF, and make it available to anyone who really wants to revel in all that pain.

Monday, March 23, 2009

This Obama character might just win my heart, after all. In his first clear-headed move since taking office, he's agreeing with the Republican chair of the tax committee in saying that the tax code shouldn't be used as a weapon.

Of course he still wants to dig so far up my ass for money that it'll feel like a root-canal, but hey, it's all about baby-steps.

Thursday, March 19, 2009

Turns out the plan is NOT to rush straight from chemo to transplant. When I went back and thought about the transplant process, at least as explained by MCV, I realized something was hinky. It would take weeks to track down the donor first identified last Summer, ensure their continued willingness to donate, harvest and treat the donation, ship it, and prepare her for transplant. Not 5 days: weeks.

Their current goal is to zap the white blood cells from her system, chemo her, and get her stable enough to undergo further clinical trials. If those trials are successful, they will then do the transplant.

That's very different, dontcha think?

The confusion was caused by the doctors making an end-game question on the first play of the game. Not cool. They asked if she still wanted her transplant to happen in Houston, which honestly shouldn't have even been a topic of conversation at the time at all.

And a bit more about the leg pain (which, right now, is my primary cause for concern): they've ordered tests--can't remember if she's already undergone those--to look for a blood clot. In the meantime, she's wearing pressure hose to keep the blood flowing. There's a risk with her severely depressed blood counts of hemostasis, a condition where the blood effectively congeals in the capillaries and pools in the extremities. Non-flowing blood causes oxygen deprivation, which causes cell death, which spells necrosis, which translates to gangrene.

So for now, in spite of the pain, she's trying to stay on her feet as much as she can. The hose have alleviated the pain in her legs, but her feet are still quite sore.

Wednesday, March 18, 2009

Tuesday, March 17, 2009

Yesterday Amanda went in for routine blood tests. She'd been complaining for a few days (really a week, but off & on) about pain in her legs, but had attributed that pain to increased activity levels (Alastair's with her in TX!).

Well, her blood tests were anything but routine, and the pain in her legs had gotten so bad that she was being pushed around in a wheelchair. Turns out her white blood count was 160,000, which is even higher than it was last week when she was hospitalized.

So she was hospitalized again. This time they performed leukopheresis to reduce her WBC, and kept her overnight. Today she got the results of the leukopheresis, and while her WBC came down to 40K, they're going to repeat the procedure and follow it up with 5 days of chemo.

Here's the kicker: they want her to seriously consider doing a transplant in Texas. Probably right after the chemo. They don't want to wait around for remission, which has us a little nervous: we're starting to think the doctors at MD Anderson believe she has a very narrow window in which to perform life-saving procedures.

To be as honest as possible, there's very little chance that she'll survive this. My research has shown a 0% survival rate on HSCT recipients with active leukemia. MCV wouldn't even consider it. But there must be some shadow of hope or they wouldn't recommend it at all, and I'm certainly no hemo-oncologist.

Alastair and her mom are staying out there thru Saturday, and her dad is driving back out there early tomorrow morning. I'm in a holding pattern for now, but will be on a plane if anything changes for the worse.

Wednesday, March 11, 2009

So you already knew that Amanda went to the ER this morning, and this just 3 days after I came home.

She was treated for dehydration, which brought her heart-rate down, but then they told her that her white blood cell counts were still too high, despite the 5 days worth of hydroxy urea she'd been taking. So they've admitted her, and will be administering a small amount of ARA-C, which is an element of standard chemo packages. If all goes well, she should be discharged by Friday.

I just spoke to her a little while ago, and she's waiting for a bed to be brought into her room. She doesn't have her computer with her, and she might not get access to the interwebs until she's discharged.

Her mom and Alastair are scheduled to fly to Houston on Saturday, so keep your fingers crossed that she gets out before they come.

EDIT: Her dad is there with her right now, and I think he's scheduled to come home Friday.

Friday, March 06, 2009

I was supposed to be racing this week. Monday and Tuesday were scheduled to be glorious (albeit cold) days at VIR with Trackdaze, but Mother Nature made other plans.

Dad had agreed to ride with me for the first time, and though we had been carefully watching both the Trackdaze site and the local weather reports, nobody had decided to call off the event before our scheduled departure time. So we dutifully packed up and drove from Richmond to Danville in just-above-freezing rain.

Now the weathermen had forecast snow for Richmond, but up until Sunday afternoon had not called for any snow in or around the Danville area. Sunday afternoon they changed their minds and called for 4" - 6" in Danville, with 8" - 12" in Richmond.

We had a wet but pleasant drive, pretty much alone on the road, and got to our hotel shortly before 5pm. The snow-line was still somewhat to our west, and we figured we had a little bit of time before heading over to the track for tech inspection.

Just for grins, we decided to check the Internet one last time, and sure enough: the event had been canceled. The wonderful clerk at the Sleep Inn let us go without any fees, and we set out on what was to become a Grand Adventure.

By 5:15 we were heading back home, and around 5:45 the sky turned really ugly. What had been freezing rain turned into a very heavy snow almost without warning, and almost equally quickly it began to accumulate.

By 6pm we were driving 30mph, and by 6:15 that had come down to 20mph. There were cars off in ditches on both sides of the road, and soon we developed a little northward-bound caravan. We watched in horror as several of the cars slid sideways, always managing to catch themselves, and each gritted our teeth equally as the cars ahead nailed their brakes going downhill.

We chided other drivers from the comfort of our own cab, knowing that if they stopped, we might not be able to convince our trailer to stop.

Then we realized that if we just worked the trailer's brakes, we could stop the truck in a straight line.

And then a tree fell. Two semis were stopped cold by a very large pine tree that fell straight across the road. A bunch of us jumped out of our cars and trucks and hauled fallen limbs & trunk while a Dominion VA Power guy cut up the remains with his very handy chainsaw. Within 30 minutes we were back on the road. I think I counted about 50 cars that had been stopped by the tree, but only about 5 guys who had been out there helping.

Then we had the stupid assholes who tried to pass us. A number made the attempt, and a few came so close that I could have easily reached out and touched them. One guy almost ran into my trailer when he merged on top of me.

It was white-knuckled terrifying driving for almost 6 hours. We got back to my house at 11:30pm, and dad was safely home at 11:45.